“It’s not your fault! You’re not lazy! And weight isn’t the most important thing it’s about being happy with the body you have and embracing those curves.”
When did you first suspect you had Lipoedema?
I always knew that I was different, it was during puberty though around age 11 that my legs got much bigger than that of all my friends and my younger sister. It was especially obvious to me at dancing classes. I was small up top but my butt and thighs were big. Then during pregnancy aged 31 my legs got even bigger. Throughout my life no matter how much weight I’d lose my legs and bum were always big. I had 2 varicose veins surgeries to try and reduce the pain and heaviness in my legs, neither of those two specialists mentioned that I could have Lipoedema . The pain, heaviness and swelling in my legs continued even after those surgeries. I found out about Lipoedema doing a google search when I was 45! I told my GP about it but she didn’t know what it was and thought I meant Lymphodema . I kept searching and about 2 years later I found a physiotherapist who immediately diagnosed me with Lipoedema and Lymphodema and I commenced the conservative management journey with her help and support.
How did you first learn about Lipoedema?
By doing a google search on heavy, painful, swollen, legs!
Can you describe what symptoms Lipoedema presented for you and how these may have changed over time from your first awareness/diagnosis?
I have heavy, painful and swollen legs, I bruise easily, lots of cellulite, weight loss never affected the size or appearance of my legs. Since diagnosis they haven’t really changed, probably much the same or a little worse as I have developed plantar fasciitis in my foot so walking is painful and losing weight has become more difficult as I can’t go for big walks anymore. Surgery is an option but financially I can’t afford it yet as I have 3 children in high school. Hopefully one day I will though.
Do you recognise these symptoms in your family members?
I think my mum and two of my aunties have it on my maternal side. My mum describes seeing her aunties when she was a child and always being intrigued by their large legs.
It’s difficult to wear shorts and bathers because I hate the way my legs look. As I get older my movement when I am walking has changed as my hip and foot hurt and my legs rub together so I definitely walk differently to how I used to. My arms are affected too so now I always try to wear something with sleeves to cover my arms.
I am overweight now, although I’ve aways thought I was overweight even when I was 48kg, so I think I probably have body dysmorphia. Exercise is becoming increasingly difficult as the pain gets worse and the size of my legs gets bigger. I am on weight loss medication Saxenda and I have lost 7kg in 6 months. It’s a slow process, but I will continue to try and lose more weight.
It’s not your fault! You’re not lazy! And weight isn’t the most important thing it’s about being happy with the body you have and embracing those curves. Some women pay a lot of money to have a big butt so I try to accept what I have even though I find it difficult most days.?
It can lead to psychological issues like depression and anxiety as you spend most of your life thinking there’s something wrong with you but you don’t know what or why? There are ways to manage Lipoedema and you can slow down its progression. 1 in 10 women have it and don’t know because it is often misdiagnosed as obesity. It’s hereditary.
